Lost Chances for Survival, Before and After Stroke

Meredith Roberts, an occupational therapist, works on balance with Michael Collins, who suffered a stroke, at the Washington Hospital Center.Credit
Doug Mills/The New York Times

Dr. Diana Fite, a 53-year-old emergency medicine specialist in Houston, knew her blood pressure readings had been dangerously high for five years. But she convinced herself that those measurements, about 200 over 120, did not reflect her actual blood pressure. Anyway, she was too young to take medication. She would worry about her blood pressure when she got older.

Then, at 9:30 the morning of June 7, Dr. Fite was driving, steering with her right hand, holding her cellphone in her left, when, for a split second, the right side of her body felt weak. “I said: ‘This is silly, it’s my imagination. I’ve been working too hard.’ ”

Suddenly, her car began to swerve.

“I realized I had no strength whatsoever in my right hand that was holding the wheel,” Dr. Fite said. “And my right foot was dead. I could not get it off the gas pedal.”

She dropped the cellphone, grabbed the steering wheel with her left hand, and steered the car into a parking lot. Then she used her left foot to pry her right foot off the accelerator. She pulled down the visor to look in the mirror. The right side of her face was paralyzed.

With great difficulty, Dr. Fite twisted her body and grasped her cellphone.

“I called 911, but nothing would come out of my mouth,” she said. Then she found that if she spoke very slowly, she could get out words. So, she recalled, “I said ‘stroke’ in this long, horrible voice.”

Dr. Fite is one of an estimated 700,000 Americans who had a stroke last year, but one of the very few who ended up at a hospital with the equipment and expertise to accurately diagnose and treat it.

Stroke is the third-leading cause of death in this country, behind heart disease and cancer, killing 150,000 Americans a year, leaving many more permanently disabled, and costing the nation $62.7 billion in direct and indirect costs, according to the American Stroke Association.

But from diagnosis to treatment to rehabilitation to preventing it altogether, a stroke is a litany of missed opportunities.

Many patients with stroke symptoms are examined by emergency room doctors who are uncomfortable deciding whether the patient is really having a stroke — a blockage or rupture of a blood vessel in the brain that injures or kills brain cells — or is suffering from another condition. Doctors are therefore reluctant to give the only drug shown to make a real difference, tPA, or tissue plasminogen activator.

Many hospitals say they cannot afford to have neurologists on call to diagnose strokes, and cannot afford to have M.R.I. scanners, the most accurate way to diagnose strokes, for the emergency room.

Although tPA was shown in 1996 to prevent brain damage, and although the drug could help half of all stroke patients, only 3 percent to 4 percent receive it. Most patients, denying or failing to appreciate their symptoms, wait too long to seek help — tPA must be given within three hours. And even when patients call 911 promptly, most hospitals, often uncertain about stroke diagnoses, do not provide the drug.

“I label this a national tragedy or a national embarrassment,” said Dr. Mark J. Alberts, a neurology professor at the Feinberg School of Medicine at Northwestern University. “I know of no disease that is as common or as serious as stroke and where you basically have one therapy and it’s only used in 3 to 4 percent of patients. That’s like saying you only treat 3 to 4 percent of patients with bacterial pneumonia with antibiotics.”

And the strokes in the statistics are only the beginning. For every stroke that doctors know about, there are 5 to 10 tiny, silent strokes, said Dr. Vladimir Hachinski, the editor of the journal Stroke and a neurologist at the London Health Sciences Centre in Ontario.

“They are only silent because we don’t ask questions,” Dr. Hachinski said. “They do not involve memory, but they involve judgment, planning ahead, shifting your attention from one thing to another. And they also may involve late-life depression.”

They are also warning signs that a much larger stroke may be on the way.

Most strokes would never happen if people took simple measures like controlling their blood pressure. Few do. Many say they forget to take medication; others, like Dr. Fite, decide not to. Some have no idea they need the drugs.

Still, there is much more hope now, said Dr. Ralph L. Sacco, professor and chairman of neurology at the Miller School of Medicine at the University of Miami. Like most stroke neurologists, Dr. Sacco entered the field more than a decade ago, when little could be done for such patients.

Now, Dr. Sacco said, there is a device, an M.R.I. scanner, that greatly improves diagnosis, there is a treatment that works and there are others being tested. “Medical systems have to catch up to the research,” he said.

In medicine, Dr. Sacco said, “stroke is a new frontier.”

Promise Unfulfilled

One Tuesday morning in March, Dr. Steven Warach, chief of the stroke program at the National Institute of Neurological Disorders and Stroke, met with a team from Washington Hospital Center, the largest private hospital in Washington, to review M.R.I. scans of recently admitted patients. They were joined in a teleconference by neurologists at Suburban Hospital in Bethesda, Md., the only other stroke center in the Washington and suburban Maryland area.

The images were mementos of suffering.

There was a 66-year-old woman with a stroke so big the scan actually showed degenerating fibers that carry nerve signals across the brain.

There was a 75-year-old who had trouble moving her right arm and right side in the recovery room after heart surgery. At first doctors thought she was just slow to wake up from the anesthesia. Now, though, it was clear she had suffered a stroke. She had lost the right half of her vision in both eyes and her right side was weak.

There was an 88-year-old who slumped forward at lunch, losing consciousness. When he came to, he had trouble forming words.

There was a middle-age man whose stroke was unforgettable. When Dr. Warach saw his initial M.R.I. scan, in his basement office at his home, he cried out in astonishment so loudly his wife ran downstairs. “I have never seen anything so severe,” Dr. Warach said. None of the three arteries that supplied the man’s right hemisphere were getting any blood.

Now the man lay in a coma, twitching on his left side, paralyzed on his right, breathing with the help of a ventilator. If he survived, he would have severe brain damage.

There was Michael Collins, a 49-year-old police officer who had had a stroke in his police car in Takoma Park, Md. Unlike the others, Mr. Collins seemed mostly recovered. The next few days, though, would determine whether he was among the lucky 10 percent of stroke patients who escape unscathed or whether he would always be weaker on his left side. If that happened, Mr. Collins said, he could never return to his job.

“You have to be able to shoot a gun with either hand,” he explained. But as time passed, Mr. Collins continued to be plagued by numbness in his left hand and on the left side of his face. He wanted to return to work — “I’m doing great,” he said this month — but the Police Department insisted that he retire, telling him, he said, “it’s an officer safety issue.”

The rest of the patients in the stroke units at the two hospitals that day were less fortunate: almost certain to live, but also almost certain to end up with brain damage. Some would have to spend time at a rehabilitation center.

On average, said Dr. Brendan E. Conroy, medical director of the stroke recovery program at the National Rehabilitation Hospital, which is attached to the Washington Hospital Center, a third of the Washington hospital’s stroke patients die, a third go home and a third come to him.

Those whose balance is affected typically spend 20 days learning to deal with a walker or a cane; those who are partly blind or paralyzed must learn to care for themselves. Many functions return, Dr. Conroy said, but rehabilitation also means learning to live with a disability.

But what was perhaps saddest to the neurologists viewing the M.R.I. scans that morning was that tPA, which only recently appeared to be a triumph of medicine, had made not a whit of difference to these patients. They either had not arrived at the hospital in time or had been considered otherwise medically unsuitable to receive it.

Few would have predicted that fate for the drug. In 1995, after 40 years of trying to find something to break up blood clots in the brain, the cause of most strokes, researchers announced that tPA worked. A large federal study showed that, without it, about one patient in five escaped serious injury. With it, one in three escaped.

The drug had a serious side effect — it could cause potentially life-threatening bleeding in the brain in about 6 percent of patients. But the clinical trial demonstrated that the drug’s benefits outweighed its risks.

When the study’s results were announced, Dr. James Grotta of the University of Texas Medical School at Houston expressed the researchers’ elation. “Until today, stroke was an untreatable disease,” Dr. Grotta said.

But the expected sea change did not occur.

One problem was that patients showed up too late. Many had no choice. Strokes often occur in the morning when people are sleeping. They awake with terrifying symptoms, paralyzed on one side or unable to speak.

“That’s the challenge — we have to ask the patient” when the stroke began, said Dr. A. Gregory Sorensen, a co-director of the Athinoula A. Martinos Center for Biomedical Imaging at Massachusetts General Hospital. “If they don’t know or can’t talk, we’re out of luck.”

Another problem is deciding whether a patient is really having a stroke. A person who has trouble forming words could just be confused. Or what about someone whose arm or leg is weak?

“A lot of things can cause weakness,” Dr. Warach said. “A nerve injury can cause weakness; sometimes brain tumors can be suddenly symptomatic. Sometimes people have migraines that can completely mimic a stroke.”

In fact, he said, a quarter of emergency room patients with symptoms suggestive of a stroke are not actually having one.

Most get CT scans, which are useful mostly to rule out hemorrhagic strokes, the less common type that is caused by bleeding in the brain and should not be treated with tPA. Stroke specialists can usually then decide whether the patient is having a stroke caused by a blocked blood vessel and whether it can be treated with tPA.

But most stroke patients are handled by emergency room physicians who often say they are not sure of the diagnosis and therefore hesitate to give tPA.

Photo

Dr. Diana Fite, an emergency medicine specialist in Houston, has completely recovered since suffering a stroke while driving. Credit
Todd Heisler/The New York Times

Dr. Richard Burgess, a member of Dr. Warach’s stroke team, explained the situation: There is no particular penalty for not giving tPA. Doctors are unlikely to be sued if the patient dies or is left with brain damage that could have been avoided. But there is a penalty for giving tPA to someone who is not having a stroke. If that patient bleeds into the brain, the drug not only caused a tragic outcome but the doctor could also be sued. Few emergency room doctors want to take that chance.

Treatment Barriers

There is a way to diagnose strokes more accurately — with a diffusion M.R.I., a type of scan that shows water moving in the brain. During a stroke, the flow of water slows to a crawl as dead and dying cells swell. In one recent study, diffusion M.R.I. scans found five times as many strokes as CT scans, with twice the accuracy.

Most hospitals say they cannot provide such scans to stroke patients. They would need both an M.R.I. technician and an expert to interpret the scans around the clock. They would need an M.R.I. machine near the emergency room. Most hospitals have the huge machines elsewhere, steadily booked far in advance for other patients.

It is simply not practical to demand the scans at every hospital or even every stroke center, said Dr. Edward C. Jauch, an emergency medicine doctor at the University of Cincinnati and a member of the Greater Cincinnati/Northern Kentucky Stroke Team.

“If you made M.R.I. the standard of care before giving tPA, most centers would not be able to comply,” Dr. Jauch said. And if it takes more time to get a scan — as it often does — it might be better to forgo it and give tPA immediately if the patient’s symptoms seem unambiguous.

Doctors do not need an M.R.I. to diagnose and treat stroke, said Dr. Lee H. Schwamm, vice chairman of the department of neurology at Massachusetts General Hospital. But, Dr. Schwamm added, if the question is whether it helps, there is one reply: “By all means.”

It has still not been shown, though, that M.R.I. scans actually improve outcomes. It might depend on the circumstances and the hospital, said Dr. Walter J. Koroshetz, deputy director of the National Institute of Neurological Disorders and Stroke.

But some who use M.R.I. scans, and who have studied them in research, say the system has to change. They say enough is known about the scans to advocate having them at every major medical center that will treat stroke patients.

“All these problems could be solved if there was a will to do it,” Dr. Sorensen said. In his opinion, it comes down to old and outdated assumptions that there is not much to be done for a stroke, to financial considerations and to a medical system that resists change. But the most significant barriers, he said, are financial.

Another approach, stroke specialists say, is to direct all patients with stroke symptoms to designated stroke centers. There, stroke patients would be treated by experienced neurologists and admitted to stroke units for additional care. For the first time, in its newly published guidelines, the American Stroke Association recommended the routing of patients to stroke centers.

But even with such a system in place, many patients end up at hospitals that are not prepared to treat them, as Dr. Grotta discovered in Houston.

He thought he could change stroke care in Houston with the stroke center idea. The first step went well — the city’s ambulance services agreed to take all patients with stroke symptoms to designated stroke centers.

Then, Dr. David E. Persse, the city’s director of emergency medical services, asked every one of Houston’s 25 hospitals if it wanted to be a stroke center. While seven have said yes, others have declined.

Stroke patients, unlike heart attack patients, are not moneymakers. Because of the way medical care is reimbursed, most hospitals either lose money or do little more than break even with stroke care but can often make several thousand dollars opening the arteries of a heart attack patient. And being a stroke center means finding and paying stroke specialists to be available around the clock.

Soon another problem emerged. As many as a third of the patients refused to let the ambulance take them to a stroke center, demanding to go to their local hospital.

“By law in Texas, we cannot take that man to another hospital against his will,” Dr. Persse said. “We could be charged with assault and battery and kidnapping and unlawful imprisonment.”

The Joint Commission, which accredits hospitals, recently started certifying stroke centers, requiring that the hospitals be willing to treat stroke patients aggressively. But only 322 of the 4,280 accredited hospitals in the nation qualify, and most patients and doctors have no idea whether a hospital nearby is among them. (The list is available on the site http://www.jointcommission.org/CertificationPrograms/Disease-SpecificCare/DSCOrgs/ under “primary stroke centers.”) Some states, like New York, Massachusetts and Florida, do their own certifying of stroke centers.

Nonetheless, most ambulances do not consider stroke center designations when they transport patients. And, said John Becknell, a spokesman for the National Association of Emergency Medical Technicians, national programs can be difficult because every community has its own rules for which ambulances pick up patients and where they take them.

As a result, most stroke patients have no access to the recommended care and even fewer get M.R.I.’s, a situation Dr. Warach said he found appalling.

“How can it ever be in the patient’s best interest to have an inferior diagnosis?” he asked. “It borders on malpractice that given a choice between two noninvasive tests, one of which is clearly superior, the worse test is the one that is preferred.”

Averting Catastrophe

In those awful moments when she realized she had had a stroke, Dr. Fite, unlike most patients, knew what to do. She told the ambulance crew to take her to Memorial Hermann Hospital, even though it was about an hour away. She knew that it was one of the Houston stroke centers, that Dr. Grotta worked there, and that its doctors had experience diagnosing strokes and giving tPA.

When she arrived, Dr. Grotta asked if she was sure she wanted the drug. Did she want to risk bleeding in the brain? Dr. Fite did not hesitate. The stroke, she said, “was just so devastating that I would rather die of a hemorrhage in the brain than be left completely paralyzed in my right side.”

“I had weird spasms as nerves started to work again,” Dr. Fite said. “An arm would draw up real quick, a leg would tighten up. It hurt so bad I was crying because of the pain. But it was movement, and I knew something was going on.”

Now, she looks back with dismay on her cavalier attitude toward high blood pressure. She knew very well how to prevent a stroke but, like many patients and despite her medical training, she found it all too easy to deny her own risk.

Researchers have known for years the conditions that predispose a person to stroke — smoking, diabetes, high cholesterol and an irregular heartbeat known as atrial fibrillation. But the major one is high blood pressure.

“Of all the modifiable risk factors, high blood pressure leads the list,” Dr. Sacco said. “With heart disease, you think more of cholesterol; with stroke you think of high blood pressure.”

The reason, Dr. Sacco said, is that with high blood pressure, the tiny blood vessels in the brain clamp down so much and so hard to protect the brain that they can become rigid. Then they get blocked. The result is a stroke.

Often, people decide they do not need their blood pressure medication or simply forget to take it because they feel well. But, Dr. Sacco said, patients are not solely to blame. Doctors may not have time to work with patients, monitoring blood pressure, telling them about changes in their diet and exercise that might help, or trying different drugs and combining them if necessary.

And it is not so simple for people to keep track of their blood pressure. Machines in drugstores and supermarkets are not always accurate. Doctors may require appointments to check blood pressure.

Even when people do try to control their pressure, doctors may not prescribe enough drugs or high enough doses.

“They’re on a couple of drugs, and the doctor doesn’t want to push it,” said Dr. Jeffrey A. Cutler, a consultant to the National Heart, Lung and Blood Institute and a retired director of its clinical applications and prevention program.

The result is that no more than half the people with high blood pressure have it under control, Dr. Cutler said. He estimated that half of all strokes could be prevented if people kept their blood pressure within the recommended range.

Another lost opportunity to prevent strokes is the undertreatment of atrial fibrillation, in which the two upper chambers of the heart quiver. Blood can pool in the heart and clot, and those clots can be swept into the brain, lodge in a small blood vessel and cause a stroke.

Strokes from atrial fibrillation can largely be prevented with anticlotting drugs like warfarin. Yet many who have the condition do not know it and many who know they have it were never given or do not take an anticlotting drug.

Some strokes can also be prevented by procedures to open obstructed arteries in the neck that supply blood to the brain.

As for Dr. Fite, she completely recovered. And she has changed her ways.

She was sobered by the cost of her treatment and brief hospital stay — $96,000, most of which was paid by her insurance company. But she was even more sobered by how close she came to catastrophe.

Now, Dr. Fite takes three blood pressure pills, a drug to prevent blood clots and a cholesterol-lowering drug. She plans to take those drugs every day for the rest of her life.

“I was so stupid,” she said. “Boy, when you go through this, you never want to go through it again.”

“I have been given that precious second chance,” she said. “I was so blessed.”

Correction: April 26, 2008

An article on May 28, 2007, about preventing and treating strokes misstated the benefits of a drug, tissue plasminogen activator, or tPA. The drug protects stroke patients from disabilities, but it does not save lives. A reader discovered the error while doing research and pointed it out in an e-mail message this week.

A version of this article appears in print on , on Page A1 of the New York edition with the headline: Lifesaving Opportunities Missed, Before and After Stroke. Order Reprints|Today's Paper|Subscribe